Hello hello... anybody here? I am going in for the pain pump trial on Monday. The source(s) of pain amount to a long story. I had a fusion at L3-4 13 years ago, endoscopic discectomy last October. But enough of the small talk. My pain is extremely elevated any time I spend more that just a few minutes on my feet. An average trip to the grocery story equates to a good 24-48 hours of deep localized and radiating pain in my lower back. I have been through all the other options. The spinal stimulator trial was a joke... oh yeah I got a buzz alright, LOL! Does anyone have experiences they wish to share?

Hello Tarheeluvr and Painsucks,

I am not a doctor, however, I become very concerned when people talk about being on pain meds. Pain meds only cover up the pain, or try to, they do NOTHING to take care of what is causing the pain.

May I suggest that for both of you, you seek the advice of spine specialists. Specifically spine surgeons/neurosurgeons. Yes, I know Tarheeluvr, you have had four failed back surgeries, which is most unfortunate. Look for the VERY BEST spinal doctors that you can find in your area. Someone who truly analyzes your situation and LISTENS to you.

My thoughts are with both of you.

RichT

dear tarheelluvr,

Thanks for the advice, but what makes you think I have not seen spine specialists. I have a very good pain doctor and have seen neurosurgeons and the like. My options are now limited because nothing else has helped. That is what happens when you hurt yourself when you are young and just brush it off. I had been dealing with an unstable spine for over 20 years, working construction and playing sports. Then 12 years ago I got in a car wreck that finished it off. Major fusion in 1995 worked for a few years but was a big contributor of my current problems
To make a long story short, this trial pain pump is working GRRRREAT! I have not felt this good in years, so I am now very optimistic about the future. Like the surgical nurse told me: if we can't fix it, we mask it.
Works for me!!!

I meant that last one to be for RichT, not tarheelluvr. And...

PS: I am on my 3rd day of the trial and this morning I have taken my last oxycontin - for the purpose of really seeing what this thing can do. I have already cut my meds by 2/3 and am in LESS pain. Yeee-HaWWW!!!

Hello Painsucks,

I'm very glad the pain pump is working for you. I hope it continues to. AND to be off of oxycontin is FANTASTIC. Cut your meds by 2/3 - Simply GREAT!!!

Now a question - Do you have any negative side effects from the pain pump? Is your mind clear?

RichT

To be fair it is still early in the process, and I just increased the pump's rate by 50% to compensate for the lack of the oral pain meds, PLUS the increased physical activity. But having said all that, MY perception is that I feel better now. I have not noticed any negative side effects, and my mind actually feels clearer now. I think I will have a better feel for this once the last of the oxycontin is out of my system. The pain relief has been really nice... and so mellow I barely noticed it at first - to get this much pain relief from the oxycontin, I would have had to take enough to make walking a dangerous proposition!

I will give you a view from an X hospital worker here. I have worked post sugical and have experience with the pump. There are alot of disadvantage to this.
The most being, the control of the amount of mg the pump will deliver when you push the button. It has to be set for that amount the doctor orders. Now, unless you are given something for what we call "Break Through" pain, the pump may or may not deliver the amount you need for your pain. There is only so much that is allowed to be dilivered by the pump. Then you have to go oral.
Then as the other post brought to light, you have the problem of getting around. The process of taking apart and putting the pump line or tubing back together is a sterile one. I doubt very much they are going to let you do this yourself. Way to much chance of Staph even MRSA in many cases. You have alot of thinking to do before you go this route. I would suggest you set down with your doctor and go throuh EVERY pro and con there is in this.

Carrie

Hey everyone, I must say to this pump I have attached to me: OH BABY where have you been all (last 6 years of my) life??? I have no had this much pain relief in a long time so I am a happy camper here. And no regrets whatsoever. Compared to being in severe pain 24/7 it is a miracle! I went from taking 60mg of oxycontin down to zero in 3 days, so it can't be a bad thing.

NOW what I would like to know is how long I will have to go between the end of the trial and 5the permanent implant. AND... how long is the recovery time for a person with a desk job?.

I am NOt looking forward to having this thing unhooked but I know it will just be temporary... so if anyone can give me estimates on time between the trial and the permanent and recovery times THAN YOU!!!

Unortunalty if is goin to very. There is no set time from pain to revory. It all depends on how much you rest and not over do to the bodies ability go self heal. We heal from the inside out.

I'm about to go and get the pump put in ....finally.....in about 2 weeks.
I just went through the trail part of it and although it wasn't fun it'll be worth it in the end.
I'm new to this site so I'm not sure how to answer someones posting as I see someone asked how long it'll be before you can get back to you desk job. While in the book of information I got from my doctor it said the recovery time is 4 to 6 weeks but I'm sure you could be back to work sooner than that. I'm a cashier and stand on my feet all day and I'm looking at just a couple of weeks off so you should be okay in no time flat.
Also I heard from my doctor that it's up to the doctor when you get the pump put in for good so speak to you doctor.

If anyone cares to write to me to let me know how your doing I would really appreciate it and any advise for my up and coming surgery would be a great help also.

Thank you so much.

Hi CalmTrails. I am finally back to work... started Monday (8/11) actually and worked half a day, same with yesterday. I am a little sore still but i am going to try to make though a full 8 hours today. My doc told me that since I had a desk job I could go back to work in 5 days. That was a little bit soon but not much as I was at day 7 on Monday.
I still have 21 staples across the front-left of my abdomen and 9 more on my lower back. I hope he removes them when I go in for follow-up appt. this Friday! And yes I am wearing the "binder" too, and will for 4 weeks or so.
So all in all, I am happy with the results. It took a few days to come out of the fog I got from the initial 10mg infusion of morphine. It is set at 0.5mg per day now so you can imagine how numb I was... but you know, I hardly feel those staples, even now. I think he may need to set it a tiny bit higher as I get to hurting towards the end of the day. I also have not received the unit to give a bolus shot when needed, which I assume I will also get on Friday (???).
Stay tuned...

Hi. I had my accident 24.5 years ago. I have had 12 surgeries to date. I have had a spinal cord stimulator for 11 years. Many of them have been good years- but 6 of my surgeries have been revisions for that. The last 2 did not work because my spinal canal is so narrowed. The new neurosurgeon wanted to try to save it for me. 3-4 hours of surgery around t7-8- laminectomies, the whole works. No guarantee it will work.

So I am going to do the trial for the morphine pump. I am not much for oral meds. I usually suffer. I take only codene and muscle relaxers. I am being evaluated for assistive technology because of the crushed peripheral nerves- my legs don't work well.

Am taking courses from home to finish my degree- am doing my husband's secretarial work/ billing/ book keeping. Have 2 kids- one just turned 16, the other almost 14 and autistic. So I have to be awake. I want to keep walking- but if I have to sit in a chair to go to the mall or something with my 16 year old- or to her dog shows- that would be okay. Except it hurts so badly to sit- stand in one place, etc.

I am hoping the pump will work and not make me sleepy all of the time.

Didn't tell my whole story here. Too long.

What about someone saying this morphine from this intratheccal pump will make the teeth rot? My sister in laws did from patches and oral meds- but you are supposedly only getting 1/5th of the dose with this implanted pump.

I wouldn't care if I hurt at the end of the day- I just want to be able to keep going for my kids. I know I have another herniated disk, stenosis, scarring, etc. L4-5, L5-S1 have been operated on 3 times- last time fused with those titanium cages.

If someone can encourage me about the pump- that is great.

Thanks up front for your help. I don't know what to expect.

how is it going with your pumps?

Hello im1bzymama,

I am beginning my 6th week with the pump. There have been gradual increases in my dose - as my activity level increases, so does potential for pain, so this does not surprise me. It could still go a bit higher, so I will likely go back in for my weekly dosage bump. They said I could keep coming back weekly until they get the pump programmed where it will give me consistent relief. Even though we are not there yet, it is still an improvement over oral meds because I DON'T get the sleepy feeling that I got from them.
As for your teeth - I have discussed this with my dentist and he says this was from the drying effect that the oral pain meds create. I could swear I had been chain-smoking pot, LOL, my mouth was always so dry! I have noticed an improvement on that front, but I still try to drink as much water as possible, as the dentist said that would do as much to help as anything else.
And oh, the dosage is much less than 1/5. I am on 1mg per day right now and, even if that doubles before all is said and done, that is still way less than the equivalent of what I was taking orally (30mg).
So, all in all, my impression is this: I have absolutely NO regrets. I am feeling so much more energetic and, yes, pain free for the most part - still working on that - but I wouldn't give it up for anything!
My suggestion is: go for it - have the trial at least. Good Luck!

hi painsucks
so glad i found this forum....my husband has been in hospital since 23rd may and to date is still there
after three operations he is still in a lot of pain and is now a paraplegic to boot.
the morphine is playing havoc with his head and we are now opting for a pain pump.

are u still happy with it..??
would love to have some update
thanks
annalise / malta

Greetings pussikins,

Nice nick, btw. You don't provide a lot to detail regarding the surgery so first I would ask if a pain specialist has recommended the option of the pain pump for your husband. If not then you have some more work ahead of you, because it is not easy arriving at that point. But if it HAS been offered/recommended, you are in good shape.
Now, as for me, I have now had the pump in me for 11 weeks now. I have had several gradual increases in the intrathecal morphine dosage to where I am now taking in 1.75mg per day - after starting at 0.5mg per day. I think it is just about dialed in now, although I am quite sore today after a Sunday of doing more work around the house than I have in years! BUT, and this is a big one, I was still able to make it to work this morning... that would hev been unheard of prior to the pump!
In summary, I wouldn't give this thing up for anything. I am still far from being "in shape" so a lot of my soreness is because of that, and THAT is still going to take some time after living a practically non-existent life for 6 years. I still need to lose a lot of weight and that is going to take some time as well, but the point it: progress IS being made!
Again, I have NO regrets, so I wish your husband well and I hope he can have the same kind of results that I have. GOOD LUCK!!!
painsucks

hi painsucks,

tnx yr comments ..
the pain pump has been recommended by his neurosurgeon but feel happier asking someone who has had exoerience with it....great news !!

ok then..i feel better after having your feedback.
at present he has a sebaceous cyst close to the spine so infection must pass before they do anything but now i cannot wait till it is done...

thanks so much...will keep u posted on any outcome.
you have been such a help.....a ray of hope in my miserable past 5 months ..

many thanks

Hello again, you're welcome, and yes, please DO keep us posted!

I suppose the neurosurgeon would know and surprised he doesn't want to do more surgery, I mean... that is his business, right? I would still look for a good anesthesiologist/pain specialist. Also, they will probably want to do a trial implant of some sort. Mine was an epidural thing with an external pump and a bag 'o' morphine around my neck! Anyway, if that works then be prepared for a few days of hell when they remove the trial. There is a healing process of a few weeks and I thought I could just take the oral pain meds and I would be fine. NOT!

Oh after 3 or 4 days I was able to function but I was one hurting unit for the first couple of days - only got out of bed to eat or pee. Major withdrawals, I tell you!!! Going from the O.C. to morphine was a piece of cake, but the return trip was NO FUN at all... not that he will be able to avoid it, but something you will want to be prepared for, and hope it isn't as bad as mine was.

So, as uncomfortable as the whole process was, it was STILL WORTH IT!!!

I was so glad to find this site and read people's replies about their experiences with pain and various treatments. For 9 yrs. I have been treated for low back pain after injury at work. I have been through hell on earth with pain that no one can understand except for others who have experienced it. We are now down to pain pump as last option. I went through a 24hr trial in hospital which really didn't give me a good idea about how well it worked. Did anyone else have uncertainity after trial and have had a pump implanted. At this time we are preparing for surgery and I wonder about side effects, the surgery,etc. Can anyone relate and help?